Acceptance Archive

40

Square Peg

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“I’m just a square living in a round world.” – Philip Phillips

One of the things I hate most about being sick is that I feel as if society has forgotten about me. It’s just so hard to fit in when I can’t drive, I get tired so fast, and going to the restroom is an adventure. So since I just can’t do normal things, it’s as if I’ve just disappeared. The old Nicole is missing without a trace and the new Nicole is so misunderstood that most people shy away from spending time with her.

So instead of just sitting on the sidelines waiting to be accepted I have to remember that there are a group of people who I always have a great time interacting with. They are those who are on a similar path as me. My MS peers.

At a recent MS Blogger summit I attended, I felt a certain comradely with fellow attendees. At the heart of multiple sclerosis lies loneliness. Sometimes, no one is there to dry your tears. No one you tell understands your difficulties. No one in your life can comprehend the emotional and physical pain you can experience every minute of the day.

But this weekend, I had a group of people who did understand. So in consequence, I welcomed the chance to be surrounded by folks like me. It doesn’t happen too often. So during the event at every meeting and every bathroom break that forced interaction was welcomed. And when I talked, I felt heard. This made my insides smile. The event reminded me how important it is to get out and mingle with peers.

So for one weekend, I was happy the entire time. Maybe because for the first time in a long time for me, the square pegs out numbered the round holes.

49

Truth Hurts

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“Three things cannot be long hidden: the sun, the moon and the truth.”

As my legs and now arms continue to betray me, I can honestly say my greatest fear in life is becoming uncommunicative, bedridden and losing my sense of purpose and significance in life.

Nothing new has happened, this is just the way I’ve felt for a long time and have told very few. Why? Because most people just won’t understand. It’s just that life can be unknown, real and very scary for any person living with a chronic illness.

In my case, I haven’t significantly responded to any therapy with the exception of chemotherapy. So right now, I’m feeling a bit bitter and put out. I need to get it out of my mind that my MS is not a common cold. I have an incurable chronic progressive and often disabling disease.

In truth, I put this out there so I can essentially release this fear. I do that so it will not inhibit me from doing what needs to be done in this present moment. I’ve watched people become mentally engulfed by their illness. Their happiest memories are trapped in their past and they feel that their future is so unpredictable that it’s difficult to see any light. That was me. I felt like I couldn’t breathe without inhaling fear.

But now I face my fears with the truth. I understand my circumstance and I don’t worry about the things I can’t control. When I’m in my darkest hour I try to look for the light. And that light is here. It’s right now. It’s this present moment.

I know that I can control what is happening at this moment. It is my choice. So I choose to…be happy.

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34

A Night Out

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The other night my husband and I went on a good old fashion date. We left my MS with a sitter and headed to a concert at a local nightclub. Of course, I was in my ever-present handy wheelchair decked out with mountain bike wheels. I was also in a good mood and ready to take on the winter air.

We arrive at the club. We are early and due to my wheels, they put us first in line. When the doors opened the guards ushered us straight in. Subsequently, we had first row standing room only positions. I was thrilled. I was proud of myself for even going. I left the confines of my laptop and condo. My biggest worry was keeping my bladder in check.

The night began with a local female disc jockey. For some reason I felt a shared feminine connection. She was dong what she loved to do, despite the odds that stack against her. I like to think, I am too.

An hour later, the funk star, George Clinton & Parliament Funkadelic, arrived and nonchalantly passed directly in front of us! For those of you who are unfamiliar with his iconic status, the closest person I can compare him to is the late great Rick James.

Within minutes the house was packed. Still, George Clinton himself managed to greet me in person. It was the highlight of the night. Really, I think his security detail was concerned about a possible stampede.

George Clinton, “The Atomic Dog”, stopped to talk to me.

I’m not claustrophobic, but even the most stoic of us would have been a bit taken aback. Not even the oh so strong smell of marijuana could keep me calm. Since I was sitting, I felt that people were engulfing me. I think my husband saw my level of anxiety rising. He gently grabbed my hand; something he seldom does, in this case it only confirmed we were in a sticky situation.

A little over half way through the show we decided to leave. We received special permission to exit through the artist only door. There was no way we could make it back through the crowd to the normal exit.

After all, an hour and a half was good for me. I was drained. I met George. I was ready to go; besides, I had to go to the restroom!

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9

Thank U

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I want to thank everyone for their support this year. You all have helped us in our goals to raise awareness and educate the public about Multiple Sclerosis.

2013 was a great year for My New Normals and 2014 looks just as promising. We will continue to provide an outlet to family, friends, caregivers and anyone living with MS or any other debilitating disease.

The most important and interesting part of the website are the comments. So thanks to everyone who has left a comment. And even if you haven’t left a comment just visiting the website raises the number of visitors which elevates the profile of the site.

Once again, thank you to our partners, friends and family. Cheers to a symptom free 2014 and hopefully there will be no need for this website in the near future.

Happy New Year,
Nicole

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23

Greater Than Myself

That’s me in church looking for answers.

“There is no passion to be found playing small – in settling for a life that is less than the one you are capable of living.” – Nelson Mandela

Strange how I continue to pray to a God, who has put me or has allowed me to be this way.

I went to my neurologist yesterday, a visit that never offers comforting answers or clever solutions. He does his job. He is a bona fide neurologist. Not God, that’s for sure.

Years ago, when I was first diagnosed, I received an MRI (magnetic resonance image) scan. The MRI is a diagnostic tool used to treat multiple sclerosis. It tells doctors how many lesions or scars you have on your brain (hence multiple). Every time you get a new lesion they proceed to change your medication. I have in turn tried nearly all medications that are offered including chemotherapy.

I nevertheless asked my doctor, “Why have I not had an MRI recently?” (Keep in mind he is the same doctor that already told me, I have too many lesions to count.)

He began explaining that if he did an MRI and it showed new lesions, I’ve already been on all the drugs available. Because of that, there is nothing more they can do for me.

That was hard to hear.

In the past, I would have exclaimed under my breath, “Oh, but you don’t know my God!”

But the truth is neither do I.

I do know however, that through this all, there must be someone greater than myself that has kept me going thus far.

27

5 Days of Doctors

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It seems these days I am going from one doctor’s appointment to the next. It’s like my doctor visits have become my social life. Just like when I’m going out, each and every time I visit my doctors I dress my best. I pick out my cutest outfit and even take extra time to make sure my hair is combed nicely. I always put on a smile and I make sure my scooter is clean which usually receives a lot of attention. The scooter tends to impress others more than me.

Well, this week I was more busy than usual. My appointments were:

Monday- Urologist
Tuesday- Physical Therapist
Wednesday- General Practitioner
Thursday- Psychiatrist
Friday – Optometrist

That’s right a doctor’s appointment everyday!

I didn’t even realize this until my husband mentioned it to me. The worse part is, after every appointment, I’m usually wiped out. So much that I’m so tired I can’t do anything else. Done for the day. So my only activity outside of the home everyday for five days in a row was going to the doctor.

The funny part is, when I got home from my doctor appointments I would watch The Dr. Oz television show. I wonder if I was subliminally drawn to watch it?

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14

Exercise and MS

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Content provided by: Tammy Mahan of Healthline

MS affects the communication between the spinal cord and brain in those with the disorder. Electronic signals are sent down long fibers known as axons found in a protective, insulating substance known as myelin. Myelin is thought to be a threat and attacked by the immune system causing it to become damaged when MS is present. There is an inability of the axons to conduct signals properly when the myelin is lost.

The signs and symptoms of multiple sclerosis are similar to other problems making a diagnosis difficult to obtain. The diagnostic process has been standardized by the diagnostic criteria that medical organizations have created. It is particularly effective in the first stages of the disease. When someone has had different episodes of neurological symptoms associated with MS such as numbness or tingling, utilizing clinical data alone might not be enough to diagnose the condition. Analyzing the cerebrospinal fluid and neuroimaging are the most common tools for diagnosis. There is a less attentive response to the optic and sensory nerve stimulation in those with MS because of the demyelination of the pathways.

There are obvious benefits to exercising for healthy individuals; there are also benefits of exercise to those with MS. Benefits include:

●Exercises helps you to manage your weight
●People with more severe MS are aided in maintaining mobility
●Muscles weakness is reduced and mobility maintained thought the toning and strengthening of muscles.
●Some of the symptoms associated with MS can be helped.

MS cannot be cured with a single exercise but it can be used for prevention and to supplement current therapies. The exercise that is chosen depends on the individual. You have to take into account the things that you enjoy and whether you prefer to be alone or with someone when you exercise. Are you going to need help and instruction for an exercise program? These questions will aid you in picking the program of exercise that is right for you and your MS.

●Bowel and bladder problems are aided with pelvic floor exercises
●Depression symptoms improve with aerobics
●Muscle spasms and stiffness are helped by stretching, Thai Chi and Yoga
●Balance is improved through aerobics and walking

Your energy will be renewed as you start to have the natural inner balance restored. MS symptoms such as aches and pains will begin to disappear along with other symptoms associated with the disease. There are several exercises that you can do to assist you with the problems of lack of endurance, ataxia, and weakness in the muscles and loss of coordination and balance so that the problems are effectively aided when you have MS.

It is important that exercises be tailored to the symptoms and begins immediately following the onset in order to get the most benefit from the exercises. Waiting increases the difficulty of overcoming the problem making it vital to start immediately when balance or weakness are the problem. Difficulties can increase when exercises are put off for too long, and the wrong exercises can make the problems worse.

Content provided by: Tammy Mahan of Healthline